Our amazing, and beautiful little boy died just eight days ago from pneumococcal meningitis (6th Feb 2010).
The sheer rapidity of the turn of events has left us shell-shocked and feeling as if we are having an 'out of body' experience. I simply feel compelled to write as the stories I have read on this site (especially that of the Mittleman's
) have given me comfort that others have asked the same questions of themselves as my wife and I have, and that it is possible for life to go on and get easier over time - we so desperately need to believe this right now.
Jacob was the kind of child who made being first-time parents easy. Constantly smiling, always happy, and with a beautiful disposition. He had been completely selfless over the last six weeks as his Mum and I have been managing our new arrival, his little sister Isobel.
On Tuesday 2nd February I had a call from his nursery saying he had a slight temperature so Jane picked him up. He perked up back at home and slept well so I went away on Wednesday morning with work as planned for a couple of days. I still have the text from Jane saying he was full of life and she was exhausted. He tired that afternoon after playing with his friends but again slept well. We kept him off nursery again Thursday as a precaution but again he had a lively day with his Mum and Isobel. On Friday morning I stayed home with him to give Jane a break and although not right he was no worse than we had seen him before with viruses. We decided that if he didn't perk up as he had the last three days we would call NHS 24 that evening. He slept a lot that afternoon and when I came back from work about 7pm Jane immediately remarked that he had got worse in the last 20 minutes.
His eyes were now half open and he was struggling to respond. NHS 24 got us to sit him up and walk a couple of paces. It was at this point he was sick. We were given an appointment at the local out of hours surgery. No ambulance as he was just about conscious. We were there by 8pm and we have subsequently found out that the doctor there sensed problems as she could not find a vein. Jane also felt him starting to stiffen and slump back in her arms. By 8.30pm we were at the Royal Hospital for Sick Children in Edinburgh by ambulance and there were people everywhere.
We were told they suspected a serious bacterial infection and were going to do a CT scan. I don't know why but I blurted out meningitis and was told that it was a possibility. The good news was that we had caught things early. By 11pm Jacob was in intensive care with tubes and wires everywhere. He had been completely sedated when he arrived and I remember trying to reassure him that all would be well as they were doing this - the last time we saw him conscious.
Jane and I were up with him all night and I recall having a conversation with the senior consultant around 2am by his bedside. Meningitis was suspected, the stiffness and slight swelling around the brain that the CT scan had indicated were the concerns. The fact that all organs were functioning and he had not fitted or seized was positive, and they reiterated that we had acted quickly. They were treating for everything and Jacob was critical but stable.
By 10am there had been no developments - a positive. I asked the senior nurse directly what his chances were. She said it was unlikely he would die but after effects were impossible to tell. Things went very wrong shortly after.
The nurse was checking his pupils around 10.30am and his right eye was bigger, the left bigger still. I said immediately that that couldn't be good. The consultant then informed us that another CT scan was required and they were preparing theatre for an emergency operation. The next 45 minutes feel surreal. Jane and I have spoken since and though you are supposed to be positive we both feel we knew that we were about to lose our little boy.
Around midday we were told that his brain stem was infected and that there was no response from his brain. They needed to check again once his medication had worn off but they were certain he was lost. Jane and I knew we had to let him go. I can barely recall the next five hours but by Saturday teatime we were told that tests still revealed no activity post the medication. It had all happened so fast that they still weren't certain of the type of meningitis. We sanctioned a lumbar puncture so we could get results in a couple of hours meaning there would be no requirements for a post-mortem.
The next few hours were magical. Both Jane and I curled up with him on the bed and fell asleep with him. Incredible that we could in the circumstances but the peace that he was radiating relaxed two exhausted parents. The doctors woke me up at around 8pm and told us that it was pneumococcal meningitis and they could now free him from the wires and tubes and let him pass away. He died in mine and Jane's arms around 8.30pm while I hummed the Night Garden to him. It was time to go.
Despite the incredible efforts of the staff at Sick Kids in Edinburgh he went from being a 'bit under the weather' to having left us in just 24 hours. They were adamant that we could have done nothing more. As parents though that is never enough, so that and also wanting to know more about pneumococcal meningitis drew me to this site. Others stories have helped me and telling mine over the last hour or so even more still.
We have Jacob's funeral in two days and it will get worse before it gets better. The only thing I'm certain of is that by sharing my experience with others who have been through similar will definitely help me personally try and live with this.